Tag: Awareness

I am long overdue for an update, but that will have to wait (just a little longer). I am posting today because I think this message needs to be heard. I tend to focus on my niche in lung cancer, but the truth is, its a big wide open field. For a very long time (think since the 80’s) the survival rate has remained pretty stagnant with few exceptions. So when one hears the word Mesothelioma, you can understand the fear it strikes on one’s heart. It was March 1998 when my family got the news my father was diagnosed with pleural mesothelioma and given months to live. To his credit, he survived 16 months. Since that time, and for a long time, treatments didn’t change and neither did the prognosis. Until now.

On August 1st, it was Lung Cancer Awareness Day, I was supposed to post this then, but I held on to it deliberatly to make a point. Every day is Lung Cancer Awareness Day for me and my family, and for all those who have been touched by this terrible disease. So I post this today, because August 6th is Lung Cancer Awareness Day as is the 7th and 8th and so on.

The second reason I post this is because many people out there who have been diagnosed or have a family member who has been diagnosed may not realise that asbestos exposure at the work place is a work place hazard, and that often, there are class action suits or government programs (although they don’t advertise!) to help support both the patients and their families. In Canada where I live, asbestos and its products are not
manufactured or in use, however, oftentimes exposure can come from old materials such as drywall, pipe fittings, or coatings. So if you are planning on a renovation, or work in construction, it is wise to be aware of potential exposure. Asbestos is stable until it is disturbed, so it is advised that you contact an inspector or a remidiation company prior to any demolition or work. I will post some links to information and contacts at the end of the post. Now that I have gotten that off my chest, I welcome you to read the following article: Mesothelioma doesn’t have to be a death sentance, by guest author Gregory A. Cade of the Environmental Litigation Group, P.C.

I have worked as an attorney who specializes in mesothelioma, asbestos and environmental law for over twenty years, and in this time my firm, Environmental Litigation Group, has helped more than two hundred thousand clients. I have spoken to many people and I have learned about their lives, experiences, fears, I became close to my clients and I have learned what most people think when they hear that they have mesothelioma.

First of all, it is important to define what mesothelioma actually is, as some readers might not have heard about it until now. Mesothelioma is a rare, very aggressive type of cancer that develops after asbestos fibers enter into a person’s body. This disease is extremely volatile, in the sense that it can metastasize extremely fast and it can take either a few months to a few decades for the cancer to develop, after being exposed to asbestos. There are 3 main organs where mesothelioma can develop: the lungs (pleural), the abdomen, liver, spleen and intestines (peritoneal) and the heart (pericardial). There are rare cases in which mesothelioma develops in other parts of the body, such as the testicles.

Throughout my career as an attorney, I have met many people diagnosed with pleural mesothelioma, the most common and aggressive form of this type of cancer. It is always heartbreaking to speak to them because you always feel and see the fear and hopelessness in their eyes. Many people would see a cancer diagnosis as equal to a death sentence. On top of that, because of its aggressiveness, since they are diagnosed mesothelioma, patients are usually expected to live between 6 and 18 months. This is why, most clients come broken and defeated, having already given up on the fight with the disease.

I believe that this is an incredibly wrong and dangerous mentality! To every person sick with this illness that comes through my door, I tell them to keep fighting, to never surrender. I personally know people who have lived over 10 years with mesothelioma. They do sports, go outside, eat at restaurants and they look great! Nobody would even think that they have cancer. As cliché as it may sound, I believe that cancer can be beaten and that nobody should ever give up hope.

In the last years, more and more treatments are becoming available to help cure cancer patients, or at least extend their lives. Chemotherapy and radiation therapy, although they yield results, are not the only options anymore. There are precise surgeries which remove damaged tissue, medical trials that can help people, there are blood transfusions to strengthen the immune system, there are pills which help fight the disease and keep it from spreading. All of these methods are worth trying as they can be the difference between life and death.

Of course, because mesothelioma, and cancer in general, are such aggressive diseases, patients adopt a fatalistic approach towards life. I want to urge people who may find themselves in this unfortunate situation to keep pushing forward! There are so many wonderful things to explore and if you are given a chance to do them, why not take it? Indeed, there are odds that the cancer will still progress, but even so, remain hopeful! Some clients who combined exercising with healthy eating and regular treatment have survived for more than 5 years, some even more that 10! They have watched their children grow, have remained with their loved ones, have explored the country and they have grown as a person. So I must emphasize once more, keep on fighting, hoping and taking care of yourself because cancer doesn’t have to be a death sentence.

When I started this Blog, it was really intended to be an outlet to express my life and with it was like living with a terminal illness, lumps and all. It is still that, but it has turned into so much more. Little did I know that a year ago on Bell Let’s Talk Day, a post I wrote the previous year talking about what it was like coming off of antidepressants would resonate so deeply. Deeply enough that it was picked up by WordPress’ Discovery team (a very awesome experience). I don’t know if this year’s post will be as profound or powerful, but I hope it touches someone out there and let’s them know they aren’t alone, and it’s ok to ask for help.

This year has been hands down the hardest year for me mental health wise. I have felt things that don’t seem like me. I have always been cheerful and tenacious, but since changing cancer medications, I have felt anything but. I wish I could just switch meds, but they ARE the thing that keeps me NED and cancer free(ish), so I can’t just stop, or change, I have to deal.

But it has been scary!

This year I have gone to some very dark places, had thoughts I never thought I’d have. I have to remind myself, that I am not these thoughts, and that tomorrow is a new day. Initially, these thoughts would casually pass through my consciousness very briefly, to float away. Then they would happen as I looked at my life saving medication and wondered why I take them? I mean what’s the point? I’m so tired of all this. Gulp. Swallow, down the meds go. The thoughts soon float away. I then found myself on occasions, especially when I was feeling particularly down or feeling sorry for myself questioning whether or not everyone would be better off without me? On very rare occasions I actually uttered these horrible thoughts, “I wish I were dead.” There it is. Dark. I am not my thoughts!

It took me a few times experiencing this downward spiral to realize that something was really wrong. I was in a crisis that I hid from everyone, even myself. Upon this revelation, I immediately called my psychiatrist. Even with counseling and antidepressants, the depression and darkness seeped through. It wasn’t until I read another blog responding to Chris Cornell’s suicide that I really even realized this wasn’t me and that my brain as the author put it, was sick. It took an increased dose of my antidepressants and more frequent counseling visits to vastly diminish the dark. I still feel down, but now I try to remember that tomorrow is a fresh start, I allow myself to feel whatever it is I need to feel, and then try to move on. I never give it a postal code. I won’t live there. I have too much to live for. Too much work to do. I love life too much, and I certainly didn’t go through all this to just throw-in the towel or bury my head in the sand.

For those who live in Canada, we have a wonderful initiative, sponsored by Bell Canada. It happens every year around this time and it raises both funds and awareness for mental health in Canada. Mental illness effects 1 in 3 Canadians, and yet it is still largely stigmatized. Bell Let’s Talk Day removes the stigma by allowing everyday Canadians to reach out and stand up, and is working to breakdown barriers faced by those who suffer from a mental illness. You can help raise awareness and funds by simply sharing #BellLet’sTalk. By doing so, Bell will donate 5 cents every time it is Tweeted, texted, mentioned online, or when you use the bell network, so call, Tweet, text your hearts out for mental health.

Be Well XO

If you or anyone you know is in crisis, please call 911 or

Distress Lines

Operated by various agencies. When in need of someone to talk to. Open 24 hours a day (unless otherwise indicated).

About a year ago, I wrote about Awareness and Action, That they are vastly different things. One is the actual act of something, the other is passive, and involves doing nothing. That’s right, nada, Zilch. Zero things are done. Bupkis. So in the dying hours of this Giving Tuesday, I want to remind people of just that. We should act and give, not just today, because we have been sold on a “gimmick”, but because we want to. Often even every day. It can be big or small. It also doesn’t have to be money, it can be time or a good deed. We have gotten too used to throwing awareness around, that nothing really happens. Lots and lots of inaction.

So why do we need a reminder?! Goodness and giving should be a no brainer, right?!

Is it that we get so wrapped up in our own drama, that we don’t see, or make time? Are we keeping score? If we are, then we shouldn’t, because life owes us nothing.

It has been a little while since I have posted and much has happened since the last post. One of the most notable things is, I was selected and awarded the IASLC’s Patient Advocacy Travel Award. This award allows me to travel to Yokohama, Japan for their annual World Conference on Lung Cancer. JAPAN!!! I cannot tell you how excited I am. For one, I get to travel to a country that I have always wanted to visit. I get to soak up the latest information on lung cancer research and practice. I get to network with other patients, advocates and experts in the field of lung cancer research, and I get to go to Japan. Have I mentioned I’m going to Japan!?

Seriously though, I want to take this opportunity to share what the IASLC does and let everyone know about their Foundation Cancer Care Team Award.

The International Association for the Study of Lung Cancer (IASLC) is the only global organization dedicated to the study of lung cancer. Founded in 1974, the association’s membership includes more than 6,500 lung cancer specialists in over 100 countries. IASLC members work to enhance the understanding of lung cancer among scientists, members of the medical community and the public. IASLC publishes the Journal of Thoracic Oncology, a valuable resource for medical specialists and scientists who focus on the detection, prevention, diagnosis and treatment of lung cancer.* For their mission statement, more information and resources, please go to their website.

Nominate Your Care Team Now!

The IASLC is excited to announce the creation of a new award, the IASLC Foundation Cancer Care Team Award, designed to recognize outstanding patient care and honor multidisciplinary teams working together to provide the highest quality cancer care.

Nominations will be accepted from all over the world. The winning team will select one representative to attend the IASLC 18th World Conference on Lung Cancer, for which IASLC will provide monetary travel support. Learn more and nominate a team for the award. Please contact them with any questions: membership@iaslc.org.

Honour, Unite, Inspire. It’s 12:01, the dawn of the 6th World Lung Cancer Day and I struggled trying to write this. I wondered if I should write about numbers and facts, or maybe about how lung cancer is the most common cancer globally*. That of the estimated 1.8 million new cases (in 2012)*, most (58%) occur in less developed countries*. That it is the most fatal cancer globally*. However, it might be more meaningful to tell you what “Honor, Unite, Inspire”, means for me, a lung cancer patient.

Pan-African Thoracic Society

I write and share about living with lung cancer is because, I truly feel that if my experience, struggles and joys can touch or inspire just one person, then I have done my job as a good human. I think back to when I was diagnosed, and throughout treatment, I felt so very alone. I think of all the people out there with that same diagnosis, and how they too must have felt isolation and loneliness. I think about all the questions and fears I had, and no one to advise me, or let me know that what I was feeling was normal. I needed blogs like this, connection to patients who have survived and were surviving. Back then, it was hard to find. Now, not so much. Thankfully, but we still have work to do. Its for this, we have a Day like today.

Everyday I am blessed to see, I get to honour those who have given me strength, those who live with this disease, and those I have lost to it (sadly there are so many). Their courage and grace, push me to be better and instil me with passion to advocate for others living with this disease. It helps me channel anger in to action, frustration into hope. One of the reasons I advocate is so that those who are newly diagnosed don’t have to. So that they won’t fall into the cracks, and so that they don’t have to face the stigma of their diagnosis. There it is, the “S-word”, that assumption that lung cancer is our fault. That deadly misconception, that impedes compassion and funding. That idea that adds unnecessary stress

and shame on a patient and their family. It is for this, we need a Day like today.

It has been over 8 years since my original diagnosis, I know that I am alive in part to where I live. I am very lucky to live in a country that has a health care system that is accessible to all of its residents. I know it isn’t perfect, we have problems too, but its still pretty damn good.

Therefore, it would behove me if I didn’t point out the disparity between first world nations and developing nations. We are often so focused on our own problems, that we forget to think of those of others. Here, we might concern ourselves with accessing the latest and greatest treatments, there they may worry they will get treatment at all. Many countries don’t have the infrastructure and provide basic care, people may not get

a proper diagnosis, let alone treatment that costs thousands of dollars a month. Their governments like ours focus PSAs on smoking cessation, the difference it that is their man way to “treat” lung cancer, after all you don’t have to treat the patients you don’t have. Here we concern ourselves with late effects or secondary cancers, there patients may worry they and their family will be shunned by their community, because there they think cancer is contagious. It is for this, we need a Day like today.

diagnosed quickly and comprehensively, are receiving the appropriate standard of care and support, are receiving as much funding as every other common cancer group, and we have either increased the survival rate to above 50%, or reduced the number of new diagnoses, we will need a Day like this.

Maybe its because I can’t stop thinking about an article I saw online. Even the openning lines seem to fan the fires of competition, when in most cases there isn’t any. My knee jerk reaction is that this is lazy writing. It builds conflict between disease groups by providing “sound bite” comments as proof and then complete ignores the issues faced by patients.

Let me begin by saying, I think all cancer is awful and never once have compared myself to my peers whether in the lung cancer world, young adult world, or in the cancer world at large. I have lost too many friends to count from every type of cancer, perotid gland, ovarian, adrenal gland, oglidendroma, etc., so I really try not to discriminate.

Articles like the one above piss me off because they skirt the issues, so let me make them clear and plain for all to see.

NIH funding

Not all cancers are funded equally – That means funding for research and publication of said research is laking in many cancer groups. When we compare disease groups in this sense, we are merely trying to state the disparity. For purpose of this arguement, I will compare lung cancer funding to breast, and prostate cancers. The facts are that for every patient who died form their respective disease, a lung cancer patient “received” $1479 in research funds, a breast cancer patient “received” $19250, and a prostate cancer patient “recieved” $9432, I don’t imagine those numbers have changed much *since 2012.

Just looking at the above, it is evident that there is a large gap in funding. This means researchers in the breast group are able to fund, publish, and present more research. One should also ask if there is a disparity within each disease group. Is there research being done on metastatic patients, or patients who are outliers? I imagine they feel neglected too. In the U.S., part of this problem may have just been addressed with the signing of the 21st Centuries Cures Act. The rest of the world however may not have a course correction, so we need to be able to recognize that in order to have equality, we need to point out the inequities. Then instead of cutting the pie smaller, we need to bake a bigger pie. We need to break down barriers, and share information. More and more we see that the driving mutations in different disease groups are the same.

Access to patient resources is different – As a patient trying to access a support group or assistance with services, I can tell you there is very little out there for patients with some cancers or diseases, where as there can be a glut for others. Even as a young adult with cancer it is difficult to access the services needed to cope with a cancer diagnosis and the reprucussions of treatments. The advent of online groups and social media is wonderful because people can connect, but groups can often be hard to find or “word of mouth” where as I can almost guarantee there will be a breast or lymphoma group in every centre. Again, the comparisson is made to illustrate the inequity, not to spur on competition.

Perception is different – I can attest to the stigma of having lung cancer. Any and almost every time I inform someone that I have lung cancer, the first thing I am asked is whether I was a smoker. I have also had people let me know about services they provide in the cancer centre when I am wearing my pink scarf, only to tell me how unlucky I was not to actually have breast cancer (I swear this happened) once informed I had lung. The truth is, most people assume if you got lung cancer, you must have gotten it from smoking. This illustrates the need for the lung cancer community to educate the public (and some medical personnel) that there are many risk factors to getting lung cancer (Radon, genetics, the environment, having lungs, smoking, unknown factors), and that smoking is a risk factor for many diseases, like heart disease, tooth decay, oral cancers, COPD, etc. The truth is, there is a stigma attached to having some cancers. Let’s get it straight, NO ONE DESERVES CANCER!!!!

Cancer is not one disease – The word cancer represents about 100 different diseases, and each one varies with the individual it effects. We are just now learning what drives some cancers, but there is so much that isn’t known. How can anyone possibly say all cancer is the same, no it isn’t. Not in the way it is diagnosed, staged, treated, maintained, long term side effects, recurrance rates, mortality, etc. What is the same is how profoundly it effects every single person it touches.

That is why I’m pissed off. They totally ignored all of those things and made it look like we can be catty children comparing ourselves for some sympathy prize, well I’m calling bullshit.

Cancer patients, at least the ones I know, and I know a few, young and old, from all over the planet are so far from this picture they paint that if they saw this article I think they’d either be hurt, apalled, or laugh because they are the most intelligent, compassionate, generous, kind, interesting people I have ever had the privilege of meeting. They have been through upheaval; poisoning (through radiation or chemo); some have been ripped open; they have gone through therapy (physical or psychological); have gone back to work; to school; retired; have traveled; become advocates and educators; become researchers; become parents (grand parents); become husbands or wives; recurred; and some sadly have passed on. So please give us more credit that calling us rivals.

Rather than write a bait-click article, do a little digging and write about the issues.

On the evening of Thursday November 17th Lung Cancer Canada hosted their annual Evening of Hope Gala. What was different this year was that our Gala would kick off our first Hope is Here Patient Summit.

Views from the 6 or 24th floor.

City Hall

Dr. Wheatly-Price

Me and the lovely Deb Maskins

Dr. R Juergens, Casey Cosgrove, and Dr. N Leighl

Our hosts with the most!

We welcomed Canadians from all over the country to the first ever lung cancer patient summit for a one-day conference held at the Sheraton Centre in downtown Toronto. The Summit featured educational break-out sessions, inspirational speakers (including myself and other patients), and the opportunity to connect with people from all over Canada who have had a lung cancer diagnosis.

The day was opened by our President Dr. Wheatley-Price. I followed him in welcoming our guests by sharing a bit about my story and all the breakthroughs in treatments and diagnostics that have been approved and are in practice since I was diagnosed in 2009. Our morning program began with New Advances in Lung Cancer and covered a number of topics: Screening and Surgery; Radiation Therapy; Immunotherapy and Targeted Therapies; Future Direction of Lung Cancer; and a question session moderated by Dr. Wheatley-Price.

Images like this always blow me away!

Adenocarcinoma drivers

Faces of lung cancer

Clinical trials save lives!

Dr. Gail Darling gave us a comprehensive overview of the roll-out for Ontario’s Early Screening Lung Cancer Program for high risk populations. This is fantastic news because all the research surrounding early detection programs is very positive. The NIH’s National Lung Screening Trial (NLST) 2011, showed a 20% decrease in mortality in the screened group. That may not seem like much, but consider that for the same number of breast cancer patients screened there is only a 3 to 4% decrease in mortality. They showed that the number of lung cancer patients needed to screen to save one life is 320. For colon cancer the number is 600 and for breast it is 1000, proving early screening for this targeted population is truly effective and does indeed save lives.

Radiologist Dr. David Palma provided a very passionate presentation about radiation in populations that may have previously been denyed an opportunity to have radiation as a viable option after metastasis. He also championed the idea that in order for patients to be partners in their care and recieve the best care, they need to know how to advocate for themselves, decipher reports and how to compare their care against published guidelines.

Dr. Rosalyn Juergens gave us the low-down on Immunotherapy and Targeted Therapies. A very informative session illustrating complexity of lung cancer and the variety of new therapies designed to treat them. She discussed the numerous targeted therapies available for both EGFR and ALK, but now also for ROS1 and other driver mutations. Immunotherapy is another area where a number of agents are being tested and approved for use in patients with great success and lasting effects. Finally, there is hope for lung cancer patients.

With our brains and notepads full, it was time for a break and a bit of socializing. Following the break, we continued with the McAlpine’s who shared their story with us. The crowd was brought to tears as Ian and his wife Cathy shared the ups and downs of accessing treatment. To my amazement, I realised that I had seen them many times and that we had shared a doctor. Their tenacity brought them from British Columbia to Ontario to get care, and I am so happy that the journey has been successful.

My former oncologist Dr. Jeffrey Rothenstein gave his presentation about participating in and accessing clinical trials. According to his presentation, only 3 out o f 100 patients take part in clinical trials and even fewer lung cancer patients participate. What is mindboggling is that 85% of patients aren’t aware that clinical trials are viable treatment options. I can attest that clinical trials save lives! I literally wouldn’t be alive today if it weren’t for that option.

My current oncologist Dr. Natasha Leighl presented her perspective on treatment access and cost. What was great about this presentation was that it wasn’t just literal cost of medications that was discussed, but the toll on the family, inequality of access, and a number of other factors that affect patients after a diagnosis of lung cancer. I had no idea that Canada was second behind the U.S. in out of pocket drug costs, and that 91% of cancer patients will suffer from financial toxicity. She also highlighted the fact that Canada is much slower than other countries when it comes to drug approval and funding. This was a focus of Lung Cancer Canada this year in their 2016 edition of Faces of Lung Cancer.

Before we dispersed for lunch, my friend and our Vice President Casey Cosgrove discussed advocacy and community involvement. Illustrating both the need for volunteers and advocates and ways to help. I loved his point that not everyone is good at or wants to do everything, but if we do what we’re are comfortable with, we can help in our own way.

During our lunch break, our keynote speaker Darrell Fox spoke to us about his older brother Terry, and the legacies Terry Fox left behind. The Terry Fox Foundation which has raised over 700 million dollars since Terry’s death in 1981 and the Terry Fox Research Institute. The TFRI is funding the Pan-Canadian Early Lung Cancer Detection Study. Darrell also shared his father Roland’s story. Rollie as he was known passed away this year from lung cancer making the Fox family a part of our community. It was a truly emotional speech and not many of us had a dry eye.

Terry Fox’s Legacy

Mr. Darrell Fox

The remainder of the day consisted of breakout sessions that included sessions in nutrition, breathing and exercise, financial planning and palliative care. Each session was very informative. The nutrition session provided ideas and tips to quick healthy meals that cater to health and healing. The exercise and breathing session demonstrated activities that one could do at home and that could be adapted to differing abilities. The session was sponsored by Wellspring who hosts a 20 week exercise program for patients. The financial planning session provided tips to help plan while ill, or to prepare incase of death. Finally, the session on palliative care discussed the variety of options and that palliative care isn’t just about dying.

After regrouping it was time to close the day with a photo and good-byes.

It is impossible to describe the feeling when you meet someone else like you.Therefore unimaginable when you meet 60. All I can say is my heart was full and I am so privileged to be a part of such a wonderful event. This was Lung Cancer Canada’s first Hope Is Here Patient Summits, I know it won’t be the last. I thank everyone in the office and all the volunteers and sponsors for everything you did!